Ann Ramirez first noticed something was wrong when, at age 48, she started waking up in the middle of the night out of breath. It felt like she was underwater, and had to wait for a wave to pass to come up for air.
“It was very scary, because you didn’t know how long that wave would last,” Ms. Ramirez, now 55, said.
For months, she dismissed the issues as a flare-up of her asthma, anxiety over her father’s recent cancer diagnosis or a sign of impending menopause. But when she finally got checked out, a doctor diagnosed Ms. Ramirez with heart failure. Her condition eventually became so severe that she needed a heart transplant.
Heart failure is a condition that occurs when the heart can’t pump out enough blood and oxygen to meet the body’s needs. Deaths from it have been climbing steadily nationwide since 2012, wiping out earlier declines. Rising rates of metabolic disorders like obesity, diabetes and high blood pressure are likely contributing.
There are medications to treat one of the two main types of heart failure, but they aren’t used as much as they should be, doctors said. “The treatments that have been proven in trials to work are not getting prescribed to people in a timely way,” said Dr. Janet Wright, the director of the division for heart disease and stroke prevention at the Centers for Disease Control and Prevention.
But growing awareness of the condition and its risk factors could change that. And new drugs to treat the other form of heart failure could also change the trajectory for patients with the disease.
What is heart failure?
There are two main kinds. The first type is the one Ms. Ramirez experienced, known as heart failure with reduced ejection fraction, in which the heart muscle is weak and does not squeeze out as much blood as it should. In heart failure with preserved ejection fraction, by contrast, the heart is squeezing normally but the muscle is stiff and can’t relax.
People with either type of heart failure often experience shortness of breath, fatigue and swelling in the legs and feet. They may be hospitalized repeatedly, and they have roughly a 50 percent chance of living five years after their first hospitalization.
Studies estimate that half of heart failure patients have the kind with preserved ejection fraction, and it is becoming more prevalent as the chronic medical conditions that cause it become more widespread, said Dr. Chiadi Ndumele, the director of the heart failure prevention program at Johns Hopkins University.
What causes it?
High blood pressure is a major cause of heart failure, as are blocked arteries. High blood pressure increases the strain on your heart, while blocked arteries prevent the heart muscle from getting the oxygen it needs.
Other risk factors are much the same as for heart attack and stroke, including obesity, diabetes and kidney disease.
Alcohol, as well as drugs like cocaine and methamphetamines, can also be toxic to the heart and increase the risk for heart failure, said Dr. Michelle Kittleson, professor of cardiology at the Smidt Heart Institute at Cedars-Sinai in Los Angeles. And there are some additional risk factors specific to women, including menopause before age 45 and high blood pressure during pregnancy, said Dr. Sadiya Khan, a preventive cardiologist at the Feinberg School of Medicine at Northwestern University.
What’s driving the increase in heart failure deaths?
Greater awareness and better diagnosis of heart failure may be contributing to some of the documented increase in deaths, doctors said.
The deaths are also partly the result of medical successes: People are living longer, and more people are surviving heart attacks. Heart failure tends to become more common with age, and heart attacks leave behind damage to heart muscle.
But the biggest factor, doctors said, is likely the rise in metabolic risk factors like obesity and diabetes — and in ever-younger patients. In 2021, there were nearly 48 heart failure deaths per 100,000 people ages 45 to 64, up from 32 in 2012. Death rates among men, Black people and those living in rural areas and the Southern and Midwestern United States also increased steeply. Some of these trends reflect the disproportionate burden of heart failure borne by vulnerable populations, Dr. Kittleson said. Black Americans, for example, are more likely than white people to develop high blood pressure and complications from it, like advanced kidney disease and heart failure.
What treatments are available?
Treatments for heart failure with reduced ejection fraction are “a triumph” of medicine, Dr. Kittleson said. Scientists have discovered pathways at work in the disease, which has led to therapies that make patients feel better, live longer and stay out of the hospital. These include drugs that reduce the heart’s workload, lower blood pressure, help the body get rid of more sodium and water and lower blood glucose levels.
But trying to treat heart failure with preserved ejection fraction has been “incredibly sobering,” Dr. Kittleson said. Efforts to use treatments that have clearly worked with the other form of heart failure have often failed miserably with this one. In the last five years, though, scientists have shown that drugs called sodium-glucose cotransporter 2 (SGLT2) inhibitors can reduce deaths in patients who have heart failure with preserved ejection fraction.
Last year, a large clinical trial proved that a drug called finerenone could reduce heart failure hospitalizations and deaths.
And recent studies have shown that, in patients with obesity and heart failure, the weight-loss drugs semaglutide and tirzepatide can reduce heart failure events and improve how far people with the condition can walk.
The new therapies have the potential to reshape the landscape of heart failure treatment. But for now, these medications remain “incredibly expensive and out of reach for most people,” Dr. Khan said. Generic versions that lower the cost are not yet available, and getting insurance approvals can be challenging.
People who face social conditions that negatively affect their health — like poverty, lack of access to education, unemployment and food insecurity — are more likely to have obesity and diabetes. They are also more likely to experience complications from these conditions, such as heart failure, “because of less early recognition, less optimal self-care and less engagement with the health care system,” Dr. Ndumele said. And chances are higher they don’t have comprehensive insurance that would give them access to lifesaving drugs.
“We’ve made remarkable advances in how we can treat, but now we have to do the hard part which is make it affordable, accessible and equitable,” Dr. Khan said.